A Long-Term Survivor

Adapted from remarks given on May 12, 2009, at the Carnegie Institution for Science in Washington, D.C., at a celebration for the 25th anniversary of the Multicenter AIDS Cohort Study (MACS), an ongoing prospective study of the natural and treated history of HIV infection in gay men. Over 7,000 men have participated in the MACS since it began enrolling subjects in 1984. The study has produced over 1,000 research publications and has been a seminal influence on how HIV is studied, prevented, diagnosed, and treated.

A few weeks ago a friend of mine, a young third-year medical student at Yale University, asked me to tell him about the "old days" of AIDS. He had just read that book about the old days, Randy Shilts's And the Band Played On, and wanted to know how the story turned out. He wanted to hear about what happened from the mid-1980s, when the book ends, through the intervening years. We had a very long lunch that afternoon.

One story I told him about the old days concerned a remarkable collection of people -- both participants and scientists -- known then and now as the Multicenter AIDS Cohort Study, or MACS. It's a story about hope, about inspiration, about the serendipity of scientific discovery, and about how activists and doctors working together opened the door for some truly great advances in AIDS research.

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Back in 1991, during those terrible years when treatment was just not good enough and waves upon waves of our friends were dying, my old doctor, Joe Sonnabend, told my colleague Mark Harrington and me that he was seeing a few people with HIV in his Greenwich Village practice that weren't dying, that weren't getting sick, and didn't seem to be progressing to AIDS. These were gay men he knew from the 1970s whom he knew were HIV-positive, and surely had been for a long time, but whose T-cell counts had remained stable for years while most of their peers had watched their T cells inexorably decline month after month.

Mark wrote to Dr. Tony Fauci, who was then, as now, the most eminent AIDS researcher at the National Institutes of Health, to ask for a meeting to discuss what Joe was telling us. There had to be other special cases of long-term survivors -- cases that might hold some clues about how to keep the rest of us from dying.

Joe, Mark, and I took the train down to Bethesda, Maryland, to meet with Tony. I can't remember everyone who was there, but I do remember Sten Vermund from the Division of AIDS, and I assume people from the MACS were there as well. Tony and Sten were polite as always, didn't dismiss us out of hand, and promised they'd look into it and get back to us.

Mark, Joe, and I went back to New York.

One night a few months later, Sten called me to say he was sending me a fax (this was before e-mail, this story is so old). At the time I didn't have a fax machine at home, but I was working at Columbia University, so I gave him the number of the administrative office of the biology department, got on the subway, found the janitor to let me in, and watched the fax spool out of the machine in a scroll of pages I later had to cut up. As I was reading in the dim light, I realized that this was the analysis we had asked for -- it was a run of the MACS data for people like Joe's special cases -- for people living with HIV who later became known as long-term nonprogressors.

In the dark of night I was filled with hope. In the bleakness of those terrible days it became possible to imagine that perhaps not all of us would die of AIDS and that there may be a way out of this horrible catastrophe.

I found out that night that there were indeed long-term nonprogressors in the MACS cohort. In subsequent months I worked with Sten and others to organize a meeting that brought together people from the MACS and other cohorts with leading virologists, immunologists, and epidemiologists to examine this newly discovered phenomenon.

I can't explain to you the hope we felt in New York when we learned there were people living with HIV who seemed to be able to coexist with their virus when so many others just got sick and died. That was a gift to us from the MACS; though it was years before the powerful drug cocktails came along to offer a reprieve, at least we knew that HIV was not universally fatal.

I also mention this episode because it was an early example of how researchers and activists worked together on a common goal, utilizing insights and expertise drawn from scientific training and real-world experience. The MACS investigators were so generous with their time and so willing to collaborate with activists -- and back then, that was such a new thing.

And, thanks to the MACS, one can draw a straight line from the data in that late-night fax to the discovery of how HIV uses coreceptors to infect cells, to the development and approval of a drug to block HIV from using the CCR5 coreceptor, and to the current, promising studies of elite controllers of the virus. This is only one example of how the MACS data were used, but there are many more.
The MACS truly was the seed bed from which a thousand flowers bloomed.

Someone, someday will write the full history of the epidemic and start from where And the Band Played On left off. It will contain the tale of what the people of the Multicenter AIDS Cohort Study accomplished -- and they will be heroes in that story.

Gregg Gonsalves is with the International Treatment Preparedness Coalition and is a student at Yale University.

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